Taking editorial liberties, the following is lifted and paraphrased from a note from a good friend to the HD community. The Jeffery Bane incident got international exposure when a story about Bane, a pHD, being assaulted and arrested by law enforcement in West Virginia for public intoxication, resisting arrest and drug use when a blog entry went viral. After hearing about this incident, aby normzach - Huntington's Disease Support Center
Interesting read. The Huntington's Disease Registry in Denmark caught my eye. Initiated and maintained by whom(who)? Wonder if there is such an animal here in the good ole USofA? Would be great to have up to date/current statistics to help do battle for funding and recognition by the SSA and VA. Fred Lothropby normzach - Huntington's Disease Support Center
Thanks Steve, Read all that and the grand Plan on the hdsa site, several times. Given errors in and the length of the monkey's Client Satisfaction Survey, question the validity of our responses as input to their assessment Proof of the pudding will be in the details and execution. Fred Lothropby normzach - Huntington's Disease Support Center
Understand hdsa is undertaking a redesign of their CoE structure.. Wonder what that means for those of us in the trenches. Hope they look at what the community expects and needs. And, what it will take to be responsive to those needs from a global as well as an individual or regional/local perspective. Lines of communication to/from the south of Maryland sometimes get distorted. Does anyoneby normzach - Huntington's Disease Support Center
Ms.America has been on Xenazine since '09 with increasing dosages as HD continues it predetermined course. Presently @62.5mg daily, 2x12.5 2xday- 12.5mg 1xday. She is/has been on EffexorXR,75mg, for depression. Her chorea ramps up when she gets off schedule, usually due to missed delivery from the specialty pharmacy (big delivery problems with Accredo). Have been vocal about Xenazine cost, butby normzach - Huntington's Disease Support Center
Seems I remember xenazine will go generic sometime this year. It will be interesting to see what the specialty pharmacies will do. It will be interesting to see if we can get the Rx filled at the local CVS. It will be interesting to see what the cost will be. It will be interesting to see if the same controls/warnings on prescribing continue. It will be interesting to see if Lundbeck continuby normzach - Huntington's Disease Support Center
Yup, Have to be careful or else Dave Hodgdon will be all over my case again - geezby normzach - Huntington's Disease Support Center
Nice to see big money going to the HD community and a proactive organization. Gabriel is the Georgetown University HD Care Initiative angel. Fred Lothropby normzach - Huntington's Disease Support Center
Understand there is an APB out in Chincoteague. "Be advised, Marsha and Steve have extra time on their hands will be in the area more frequently". Enjoy the summer. Fredby normzach - Huntington's Disease Support Center
Marsha/Steve, Seems posting my observations and impressions of HDSA results in the SSA/HD issue has offended some regular contributors to this forum. If those posts are out of the scope of this forum, I apologize. To those who take the low road to address their objections and indignation to my views and defend HSDA in the SSA fiasco privately via personal message, no apology. I will cby normzach - Huntington's Disease Support Center
Changes to Medicare and PT/OT/ST in effect. Wonder why we didn't hear about it from our self proclaimed advocate and had to read about it in HDSA's home town paper. This is a big deal for us all - as a friend said - read it very carefully. And it looks like HDSA is a day late, a dollar short with SSA, again, and trying to play catch up, again, with their plea to the community for help.by normzach - Huntington's Disease Support Center
Good and difficult questions. This forum is a good place to start gathering data and personal stories about the everyday struggles confronting people with HD. Marsha Miller and Steve Ireland who oversee The HD LIGHTHOUSE are good people and respected professionals within the community. Your research department may wish to contact a medical institution involved with HD research and careby normzach - Huntington's Disease Support Center
Below is my response to the HDSA POC about the draft protocol. The first HDSA link was a correction to the second link to get one to the draft when it was put out for comment Don't know who screwed up, but it was put out under the HDSA byline. "Really not qualified to comment on the medical/scientific/ethical content of the draft protocol. However, given far reaching potential impact ofby normzach - Huntington's Disease Support Center
Using an educational video from HDYO, , as the introduction for this year's HD pitch to the advance placement biology classes at the local high school here in the south of Maryland. Really neat as it will be young people talking to young about HD which will break the ice rather than an old man working his way through a bunch of definitions. Atta girl for your daughter for getting involvedby normzach - Huntington's Disease Support Center
for what it is worth - understand Xenazine has run its course and will be going generic sometime this year. this will have an impact on those of us who receive it via specialty pharmacies such as Caremark and raises questions such as will Lundbeck still be involved, will the average corner pharmacy carry the generic, what will the cost be and how will that effect our copay?by normzach - Huntington's Disease Support Center
Howard, Also had problems with Accredo which is subordinate to Express Scripts - unable to get thru on 800 number, non delivery of xenazine on promised date - called the Xenazine information/customer service number, on the Lundbeck web site, they switched us to Caremark the CVS specialty pharmacy, they transferred all info to CVS and delivery was on time. Delivery will be automatic. No needby normzach - Huntington's Disease Support Center
Accredo finally made delivery yesterday after failure to deliver as promised and continual and unnecessary efforts over five days to arrange delivery. resulting in three days off Xenazine. effects are increased and uncontrolled chorea, further weakening of the dominate side and a general feeling of feeling lousy - just in time for the holidays - Thanks Accredoby normzach - Huntington's Disease Support Center
Beyond changing specialty pharmacies, pHDs and caregivers can voice their distrust of Accredo to service prescriptions by filing a formal compliant. In our case it is Medicare, , and TriCareForLife, ’ The web is great for this as it leaves a paper trail that can be retrieved if needed. It will also will give needed visibility in the service being paid for by your insurance. A call to thby normzach - Huntington's Disease Support Center
This is for those pHDs and care givers being serviced by the specialty pharmacy Accredo – pay attention and do something !!!!!!!!!!!!! Previously posted about the fiasco trying to reorder Linda’s Xenazine Rx from Accredo via the 800 number. With help of the Xenazine info center, Chris??? thanks, Accredo Florida confirmed delivery would be on 12//6/13. Another phone call from Accredo Tennby normzach - Huntington's Disease Support Center
guess it pays to get vocal every once in awhile. Xenazine information center, 888.882.6013, got involved. They changed our provider from Accredo to Pharmacare - seems we were not the only ones that had problems with Accredo.by normzach - Huntington's Disease Support Center
was wondering if anyone else is having problems with Accredo in ordering Xenazine refills. Have spent more than an hour over 8 different calls in trying to get through. Tried their web site which requires a member number which we don't have or want. Finally called Lundbeck, they energized someone at Accredo in Florida who called me, circumventing their normal procedure. Hell of a way to runby normzach - Huntington's Disease Support Center
For a comparison, check out Nancy Wexler's outfit, Hereditary Disease Foundation. Seems to me, the last time I looked, HDF had less than ten paid staff, HDSA had a significant larger number. Or look at their web pages and count the number of listed names. Or look at the number and types of research/support efforts each are funding. Or check with a local HDSA chapter to see if they can raise fundby normzach - Huntington's Disease Support Center
Linda went thru a year of "morning sickness" - nausea upon getting out bed in the morning, infrequent vomiting, nausea on being moved from one location to another - visits to the primary care provider and a gastro doc, scopes, scans, various anti nausea and vertigo meds plus a visit to the neurologist to see if there was any residual issues from last year's fall and subsequent sub dermaby normzach - Huntington's Disease Support Center
Wheels turn slow – have found out veterans are considered to be catastrophically disabled if they have a permanent severely disabling disorder, such as HD – which upgrades them in the pecking order for medical care to category 4, which opens up other avenues of support. FYI: VHA Directive 2010-054 Catastrophically Disabled Veterans Evaluation, Enrollment, and Certain Co-Payment Exemptioby normzach - Huntington's Disease Support Center
Howard, During my limited time being here and about have found the power of the word to be a powerful tool in dealing with organizations such as Eddy Visiting Nurses. A nice letter documenting your experiences, with names and dates, to the professional organization licensing Eddy with copies to your and their state medical practice oversight boards; to the people who recommended them to you;by normzach - Huntington's Disease Support Center
suggest referring your client to the medical community where her HD related physical and mental problems can be properly addressed.by normzach - Huntington's Disease Support Center
we have zhouun, baroujh and coyocer pitching shoes and darrenrobert pitching who knows what. what is nextby normzach - Huntington's Disease Support Center
still chasing Linda's application for disability. met with a state vet benefits In spite of the two denials I found, he recommended apply given the fact ALS, Parkinson's diagnosis are now basis for approval. The VA has received additional funding to extend their Home Based Primary Care Program to rural areas, like the south of Maryland. As Linda is already approved for VA Medical Benefits, theby normzach - Huntington's Disease Support Center
For you legal beavers, found two appeals for consideration for VA benefits and HD 09/29/97, docket 95-14 812, Huntington's chorea as a residual of exposure to Agent Orange - denied 04/13/05, docket 97-30 386 Entitlement for Huntington's Chorea - denied Yeah, I know its another windmill, - but what the hey.by normzach - Huntington's Disease Support Center
Am the first to admit I don't know all the answers - but the wording in the schedule -"though a familial disease, has its onset in late adult life, and is considered a ratable disability" seem to be the key - will talk with the benefits person this week to see where and how we go from here. My Dad used to say - " you will never know the answer until you ask the question"by normzach - Huntington's Disease Support Center